Seizure Meds

Tristan painting pumpkins today!

Hello!

What an exciting few weeks. Tristan is finally getting over Whooping Cough. He is still coughing some, mainly when he laughs or starts crying.

We had an appointment Thursday with his neurologist in Cinci, and we are going to start weening him off his Topomax. That is one of his two seizure meds. Things are going good so far. He said the first week would be crucial, because his levels will begin to drop. We are praying for no seizures! I feel in my heart though that he is good to go.

Tristan is also not attending school right now. Due to his Whooping Cough his body is still not 100% up to par. And with all the H1N1 going around, we are not risking anything. His pediatrician agree with us also. Soo Tristan will not be going back to school to probably after the first of the year is my goal. Just need people to start getting healthy!

Tristan is doing great otherwise. This week we will begin doing physical therapy twice a week with Bobbi at URS, once on "land" and once in the pool. We are also hoping to start doing OT twice a week now. Our insurance company is approving more sessions now.

We have also started what I call "computer game therapy" in Cincinnatii with the Perlman Center. Beth is our therapist. She is great. She is very possitive, and is good with Tristan. We went last week for our first time. She made us a CD-Rom with adapted computer games for Tristan to do at home. It also features storybooks using a powerpoint program. Its hard to explain but its really neat, and Tristan loves it.

Overall, Tristan is doing great. We are keeping really busy with all this therapys and starting new therapys. Therapy is officially me and Tristan's life anymore. But it is what he needs, and he enjoys it ( most of the time) and I got to do whats best for him!

As of September 27th....

New chair on the side view, and then of course Tristans big smile!

Tristan in his stander, this helps build his bones stronger, and also has a tray

Tristans 1st day of preschool. Monday September 21st

Hello!

Well lets see, since we have been back from Michigan Tristan is FINALLY starting to feel better. He had the stomach bug for about 24 hours over Labor Day weekend, then came down with a respiratory virus. He did not start school until last Monday, and only went two days. I did take him in on Thursday for his very first school pictures!
Since we have been back we are still seeing good things with Tristan. His hands are more open now than ever before, and his head control is doing well also. He is still able to pull himself up if he is a bent over touching his toes kind of position.

We are working on getting him a tricycle, its just a matter of finding the right one for him. I have seen them in several catalogs and then with the kettler website.

Also since we have been back Tristan got his new chair in, ( what you see in the pics) this is a feeding chair/play chair. He can sit pretty close to a 90 degree angle and then the chair has a tray for him to use to put toys on. We have also got his stander adjusted again ( thanks Bridgit and Mel!) and have been putting him in that every day. He is tolerating it for about 30 minutes right now.

We also started seeing DR. Bargus-Adams in Cincinnatii for Cerebral Palsy Clinic. CP clinic is a time where we go and see 3 doctors, nutrionalist, social worker, and therapists all within a few hours. This saves me alot of trips down there. They are very happy with him, and happy with what we are doing for him at home. We go down to the Perlman Center in mid- October to meet with Beth, an Occupational therapist who has a lot of great ideas on computer games for Tristan to use. The Perlman Center is an AMAZING resource, and is a large part of the reason why I transfered Tristan to Cincinnatii Childrens.

Otherwise he is doing great, he is getting SOOooo BIG!

And as of right now, we will HOPEFULLY be taking Tristan back to Euro-Peds next summer again. It is a very exspensive trip, and will be working on more fundraisers to help him get back up there again, more than likely! If anyone still wants to donate money to Tristan you can still do that through his NorthOakland account, or his National City account. Both of these accounts will always be open!

for those who havent heard...

Well.. the last day in michigan did not go as planned.
Tristan woke up at 7:30 friday morning vomiting and had a slight fever. So, we ended up cancelling Friday at Euro-Peds and started the journey home about noon.
Tristan did get sick 3 times on the way home, and finally quit vomiting about midnight friday. So he is doing better now. Still not eating too much, but is on his way to recovery from being sick and all his therapy
Now I got his Michigan stomach bug, and we are trying not to pass it to anyone else! So we have been laying around at home, not seeing anyone yet!!!
Euro-Peds was a great expierence for Tristan. It pushed him like he hasnt been pushed before. Overall he did great up there, and hopefully after our stomach virus recovery he will continue to hit those milestones.
Once again, thanks to everyone who helped us get to Michigan with Tristan. For all the thoughts and prayers. Tristan is very lucky to have such a HUGE support group. And Chris and I both are thankful for it too.
I will continue to post on here how Tristan is doing. I will not be posting everyday, but will use this like his carepages. I will do updates on Tristan, how some of his big appointments go, and how he is doing in preschool this year.!

Day 9

Hello.
Sorry so late tonight, been busy packing up everything! We are pretty much loaded up now, and ready to go! Tristan has therapy from 12:30-4:30 tomrw ( friday ) so it will be late before we get home!
Tristan did okay today. He had a rough day. He has been doing lots of "startling" reflex when he is laying on his back. When he does this he does the loud panic cry, and his arms fling in close to his face, causes him to rip his glasses off, and scratch himself, or even bite his finger like he did today. This is not new, he does do this at home sometimes, just not near as long. I just have to hold his arms down and do lots of that mommy comforting, and he will calm down. It just takes awhile. Other than that he did really good.
He got to play with Karla again today, and the 2 new hires, which the more girls for Tristan the better! :o) Once again he did alot of neck and trunk work. He is doing great with his head control. Still not like we would "want" it to be, but hes doing great! Holly keeps saying that after we get home, and he gets in routine, and his muscles rest, that is when we will see our best results.. soo hoping thats true!
He got to ride his bike again today, his favorite and was just happy as ever. I think today is the most tired he has been also. He is just getting run down with everything, so going home will be great for him also!
Just wanted to thank everyone for checking in on him/us. We made it through this trip, and hoping to do another trip up here between February / March. Just depends on his money situation, and our schedule in general.
Tristan does start preschool on Tuesday when we get back, so this has been a life changing weeks for us. With the therapy and now entering the "school" age... Our life is going to be different now, no more late nights and sleeping till noon. We will have this home excersie to do with him everyday for about an hour, and I could go on and on! I will post about his last day either late tmrow night or sometime Saturday. We are just ready to come home and REST!

And Day 8 is done....

tristan in the cage today, and he is not happy!

Riding his bike again, saying hi to Ms. Karla at the window!

Tristan on his bike journey... going up the "mountains"

Tristan working on head and trunk control on the ball.. with Bucky Bear!

Once again, working on head/ trunk control, getting tired..

Wow... day 8 is done, hard to believe only 2 days left. Today was a hard day for Tristan. He was very upset with us when we got there, and he relized what was going on. He proably cried for the first 40 minutes or so. He just wasnt having it. THEN... the suit came on, and Ms. Karla came out ( dark hair lady above) and she knows how to make Tristan laugh! Tristan than cheered up and worked very hard. Its nice to hear him laughing through the glass when he is working so hard. He did alot of work on the ball, and was actually rolling over on the ball, along with Bucky his bear. After he got his 15 minute mommy and mamal break, ate a cracker and drank some juice Tristan was ready to get on his bike today. He was on the bike for about 20 minutes or so. Going up and down the mountains and all over the bottom of the hospital. The video below is one of Tristan's favorite parts on the bike, going to the cafeteria and doing donuts before starting the ride back. If you turn your volume up on the computer you can hear Tristan laughing while doing his donuts. Dont mind Holly and I's conversation.

Today we got Tristan's home excercise program.. which was kinda neat. It is full of detailed stretches and has pictures of Tristan to help us continue what he is doing at Euro-Peds @ home. I will have it on me for awhile if anyone wants to check it out!

Today was our last night "on the town".. Tomorrow after therapy we are coming back to the hotel to start packing up since we come home Friday! YEA!!!

Thursday I should get my post up here earlier, and I probably wont post Friday's post till some time Saturday, because it will be late for us getting home.

Tuesday Day 7

Tristan on his bike again today!

He did soo good today, he fell asleep on the way home... him and bucky bear

Tristan had another wonderful day today. So far the best.. he keeps getting better every day, which is what we are going for here! :o)

Dont think that all he does is ride a tricyle around either, those are just some of the easiest pictures for me to get, and when he is having the most fun! He does his hour massage and stretch on his legs when he firsts gets there. Then gets his suit on and works alot on head control and sitting. Then he usually uses the walker or the bike for his "fun" time. He also got in the spiderman cage yesterday again. Then when he gets the suit off he works alot on rolling and more on sitting and head control. He is pretty much in a routine now. Alot less tears today. He is doing good.

Today is also the first time he fell alseep on the way home.

Another great day down, 3 more to go..

DONT FORGET TO CHECK OUT TRISTANS VIDEO THAT I FINALLY GOT UPLOADED ONTO YESTERDAYS (MONDAYS) ENTRY!!!!

Monday.. day 6

Lets go for a ride Bucky!!

Tristan loves the bike! The plaid things on his hands are little splints that help is hands hold on to the bars..

GO TRISTAN!!!

Daddy and Tristan at a German resturant in Frankenmuth

Well, today was AWESOME!!!
Tristan did the best he has done so far today, which is great!

I thought he would be upset going back with the weekend off, but he wasnt too bad. He did cry when I took him into the 'massage' room, and his eyes said "mommy, you brought me back here!"but after they got the video going he was into watching his Barney movie while getting his morning rub down and stretch.

Once in the suit, he was full of laughs today. While Karla the aide was playing with him while Holly was positioning him different on the ball, and sitting right. He then got on the tricycle today, and went on a big trip! They took him down the hall, on the elevator into the basement of the hospital. He was on the bike for probably a half hour just pedling and laughing. It was a great way to start the week!

We talked to another family @ Euro-Peds today, who gave us LOTS of information. Found out that insurnace will not pay for one of the tricylces ( which we figured) soo Kettler is a brand of tricycles that can be bout in a store that we can adapt farther to have a bike for him. SOoo if anyone is at a toy store and sees one, let me know!!! we went to Toys R US up here, and couldnt find one.

We had a great weekend with Chris up here. It was very nice to see him. Tristan and I missed him like crazy. We went up to Frankenmuth over the weekend, and walked around. It was cold, with on and off rain so it was kinda hard to enjoy. At one of the stores though Chris found this Ohio State Teddy Bear that stole Tristans heart. We could not get that bear out of his sight, sooo Bucky the Bear is Tristans new friend, he came to therapy with us today. That is the bear you see in some of the pictures.

Sooo one great day down today, 4 more to go. Tristan is getting soo much stronger, and his trunk control is coming along!